Blog Section

An Interview with Roy Nierenberg

Part 1 of 3: Living with Huntington’s Disease

By Linda Shin

About Roy:

Roy Nierenberg’s life changed dramatically when he was diagnosed with the Huntington’s Diseasegene in 2009. A brilliant man, with degrees in physics, law, and economics, Roy has lived the type of influential and relevant life most of us only fantasize about. He served in the Office of the President for both President Ford and President Carter as a lawyer and an economist before moving into the private sector.

In 1983, Roy founded a company that produced computer-assisted thinking software to help users plan better projects and think up new ideas. The company thrived under his leadership for nearly 30 years. Then, his family began to notice a cognitive decline. The HD diagnosis forced him to step away from the leadership role he enjoyed for so long.

Now retired, at 72, Roy finds meaning and relevance in different pursuits. He enjoys singing in the Berkeley Community Chorus & Orchestra, riding his bike, going to science lectures, practicing Qi Gong, and going to support groups.

Roy is married and has two children. Roy’s wife (and care partner) joined an online support group for HD caregivers and founded an in-person HD support group for Caregivers in the East Bay.

Last summer, Roy accepted a request from HOPES to share his personal experiences and insights with the broader HD community. The interview is broken up into 3 parts: 1) Living with HD, 2) Relationships and New Endeavors, 3) Looking Ahead. These are his stories.

“I have Huntington’s Disease. It’s a genetic disease. Each child of someone with HD has a 50% chance of inheriting HD, and I found out I was vulnerable in 2 thousand and—hold on a second—2008. And it’s the second major disease I’ve had. I had leukemia, and immediately after I finished chemo and was entirely in remission, I got tested for Huntington’s. I found out I had it.

My father had what’s called chorea in Huntington’s—which is the jerky movements. But he wouldn’t tell—he would not tell me what disease he had. And he wanted—I mean, I think he was a little ashamed of it, and in denial of it.

I was visiting him more often at that point. I said ‘Pop, I know you love us. I’m sure you’d tell us if what you have is anything that can be passed on.’ He said ‘I’ll get back to you.’ And a couple of weeks later, the day I found out that I had Huntington’s Disease, he called and said, ‘The family lost money with Madoff, and I have Huntington’s Disease.’ The family had invested in Madoff and, I mean, I’m not glad the family lost money because of Madoff, but it was the thing that led him to disclose that he had Huntington’s Disease. So I started going to support groups, and I started reading about it.”

Roy (center left) at the monthly Huntington’s Disease support group meeting in Palo Alto (Mr. Hanson-Kahn)

“When I found I had Huntington’s disease, and I was running my software company, I decided to talk with someone who helped my son through learning disabilities. Chuck Ahern, PhD, a consultant. He’s really great. He said, ‘You know, I don’t normally see people who aren’t teenagers, but I can do it.’ He had me take a cognitive neuro-psych assessment. It took 8 hours. It was expensive. And the psychologist said, ‘Roy, you’re still smart, but you’re slower, and you’ve lost like 25 points on your IQ.’ But my IQ was high to start with, which was neuroprotective. Chuck said, ‘you should bring someone else in the family.’ So I brought in my 22-year-old daughter to run my software company.

We’ve closed down the company since then, and Huntington’s Disease prevented me from really being able to make good business decisions. I also couldn’t balance a checkbook. I was bouncing checks, and not making good business decisions.”